Documenting dressings, Beginning HBO

I was thinking about my nine+ years of treatment and the optimism I’ve carried all these years (most of the time). I named my first blog “The Intensive Interferon Experience” because I thought it was the only treatment I’d need to rid the cancer from my body. Granted, I was in remission for a short time after completing that treatment until I had a deep tissue massage. A tumor popped up on my leg less than two months later.

Changing oncology practices and with a new treatment prescribed for me, I started this new blog, once again believing that the Isolated Limb Perfusion would lead me to remission. It obviously didn’t, and I’m a bit wiser and a bit more grounded in reality with each new treatment.

Before I get to the dressing changes, I want to document the week. I had a wound specialist appointment on Tuesday where they photographed and measured the wound. It’s getting a little smaller. She did more debriding and confirmed that my tendon is running through the right side of the wound (she did some debriding there too!). I told her about the continued burning, and she doubled my Gabapentin (Neurontin) dose (take two 300mg capsules every 6 hours). She added a Mesault dressing (sodium chloride).

I saw my wound specialist again on Thursday. She was happy to see some granular tissue popping through and did more debriding. I need to add that before any debriding is done, lidocaine gel is applied and allowed to sit for a good period of time before she starts cutting. Because I have some reddened skin below the wound, she prescribed Cephalexin 500mg because it’s good for soft tissue infections. This could still be pseudomonas.

Also on Thursday I had my needle biopsy of the bulge on my left pectoralis muscle. Bill was allowed to stay in the room. The doctor did three cuts and I left with a bandaid covering the site. The results will come next week. I needed to be off warfarin for 5 days before the procedure and was instructed to begin the following evening.

At physical therapy Monday and Wednesday, I had dynamic tape applied to my weak left leg to help with foot drop and McConnell tape applied to my knee. I haven’t used my brace all week! On Wednesday, I walked .3 mile in 16 minutes with no brace.

I’ve been doing a lot of dressing changes lately, and I want to document them here in case I need to refer back to them later. So, here are the steps for Dressing #1, a wet-to-dry dressing: take a 4×4 gauze and completely unfold it and then fluff it into a ball – I swirl it into my left hand; place fluffed gauze into wound; place 2 4×4 gauze squares on top (I secured these with tape to prevent rubbing); place a combine dressing over that and secure with tape; place elastic stocking over all.

Dressing #2, still wet-to-dry, but with the addition of Dakins (bleach solution) to fight pseudomonas: wet a 4×4 with a few drops of Dakins; squeeze out any excess liquid; fluff and place on wound; place Adaptic dressing; place 2 4x4s; finish as usual. Since I was having SO much trouble with the gauze sticking at the same place where I have exposed nerves, the Adaptic dressing that has vaseline on it should help.

Dressing #3: Unfold Mesault (sodium chloride dressing); cut one of the squares into a circle to fit inside my wound; place Mesault dressing into wound; fluff one 4×4 and place on top; proceed as usual. I’m adding a little extra vaseline on one edge of the Adaptic to stop the little bit of sticking that’s still happening.

My skin is very red and irritated around the wound, so it was suggested to thinly apply Calmoseptine Ointment (available over-the-counter). I can’t tell if it’s helping yet.

This week I had hyperbaric oxygen therapy treatments (HBO) on Monday, Wednesday, and Friday. There was no doctor available Tuesday or Thursday so those treatments had to be cancelled. I wasn’t nervous to begin until I got there – what if I couldn’t pop my ears! The nurse calmed me down reassuring that they would stop the treatment if that happened (and send me to an ENT doc to have tubes placed in my ears!).

I needed to completely undress, including all jewelry, lotions, etc., and put on two cotton hospital gowns and foot coverings. Then I sat on a hospital gurney for the nurse to take my vital signs and the doctor to check my ears and lungs. Then I laid back and tried to get comfy enough for the next two hours. the nurse gave me a bottle of water in case I needed it to swallow and help pop my ears. She also gave me a mask so I could breathe “room air” for 10 minutes in the middle of treatment. She slipped a band around my arm and asked me to press a big silver button that told us whether I was grounded. My foot covers were slipped off, I was covered up, and asked what I wanted to watch – choices are Direct TV, a movie from their library or yours, or your music. Although I took in several CDs of music, the nurse recommended something more distracting for my first time. I decided on “My Best Friend’s Wedding.”  The gurney is raised, slid into the HBO chamber, the chamber is closed and secured. You can hear the air blowing in and the 10-minute dive begins.

I started popping my ears every other second, too worried to allow the pressure to build. Pop…pop…pop…pop…pop…I experimented with ways to pop my ears and became quite efficient. No pain!

After the dive I breathed100% oxygen for 45 minutes, then put the mask on for 10 minutes, then back to the oxygen for the last 45 minutes. It ended by bringing me back up from the dive which lasted 10 minutes and involved more popping of ears. Vital signs were taken – blood pressure goes up during treatment (I was at 177!) and lowers back down to your baseline within an hour after treatment. Then the doctor checks your ears and lungs again. That’s it! You can get dressed and leave.

Busy week to say the least! Next week I’ll have HBO M-F, a wound care visit, physical therapy, and an INR check. I should also learn the results of the needle biopsy.

Onward!

Slow Progress Continues

Since my last post, my hubby and I were able to take the most wonderful vacation which we both needed. We began with a stop in Raleigh and then headed to Savannah for two nights. We visited Clearwater and the Phillies training camp, and then spent almost two weeks on Captiva Island, FL. Talk about paradise! The weather, flowers, beach, bird-watching, and shelling were all spectacular! Being able to spend time with friends was so much fun! Heading home, we stopped in St. Augustine for two nights, and then back to Raleigh and finally home. I’ve had fun doing crafts with all of my beautiful seashells. Having a break from being a cancer patient/caretaker was most welcomed!

Reality didn’t waste any time though with infusion on March 9th followed by out-patient surgery on March 10th which finally removed the soft tissue tumor from just below my right knee. The surgeon showed me the tumor, and it looked like a perfectly round brown marble. Good riddance! He was able to fold the skin edges and close the C-shaped incision with stitches. However, because the site had been previously radiated, the skin was still brittle and the blood supply less than ideal. All of the skin died and I was left with a gaping hole with necrotic (dead) tissue. It seems that no one expected that outcome. The wound is a good candidate for the vacuum pump I previously used, but I refuse to go through that horrible ordeal again. Fast forward to today – I have gone through three rounds of antibiotics (two of Keflex/Cephalexin and one of Bactrim), had stitches removed, visited dermatologist who took a culture and suggested Duoderm as an alternate (easier) dressing, had follow-up with surgeon who said “no” to Duoderm because it keeps the wound too wet, and had visit with wound specialist who said hyperbaric oxygen therapy might be an option (she’s asking my surgeon and oncologist). I have to do twice daily wet-to-dry dressing changes which includes removing the dressing, washing the wound, blotting dry, applying Santyl ointment, and redressing. They all agree that this is going to take months to heal. It has been quite painful and has impacted my mobility (limping on both sides now). Finally unable to take the constant pain this week, my surgeon recommended alternating Motrin and Tylenol every three hours which has provided enough relief to make it bearable and allow me to sleep better. I’ll revisit the wound specialist next week when she’ll debride (remove) the dead tissue to promote healing. Fun times!

After our vacation I had two additional physical therapy sessions. The therapist was impressed by how much my exercising in the heated pool at Captiva Island had improved my side-stepping, high steps, and especially walking backwards. Because I was halfway through my insurance-covered visits for the year, we decided to discharge me and I joined their gym. Now I go to the gym at least 2-3 times a week and have already increased weights and reps, and have increased my speed on the treadmill from 1.2 to 1.8 mph. However, I still have a death grip on the handles! I walk 4/10 of a mile, and then do stretching and the various machines. I’ve noticed the biggest difference in the strength of my left arm and shoulder.

Yesterday I had my oncologist check my left knee because of continued and worsening pain with steps and walking. There also appears to be some fluid buildup. I’ve been hyper-flexing it for 9 months now, so it’s no surprise that it’s sore! He suspects patellar tendonitis and suggested a knee support and icing. I think I’ll also try eccentric decline squats at the gym tomorrow and ask about using the stationary bike again. I guess I have to try and do even more to strengthen my quads.

My garden is started and the spinach, carrots, and basil have already sprouted. It takes me forever to do the simplest things, but I’m persisting and will finish planting this weekend (red beets, zucchini, snap peas, lettuce). I still need to buy some tomato plants. I’m not planting any Swiss chard this year (pretty but hated it!), and I still have kale and butternut squash in the freezer.

I’ve been terrible with my diet ever since gaining so much weight on the steroids. My plan is to do a better job with meal planning, eliminate added sugar and carbs, drink more water, and start losing this weight. It will be easier once the carrot cake I baked for Easter is gone! If I can steadily lose 2 pounds a week, I’ll be happy.

My next brain MRI and neurosurgeon follow-up is next week, and then my next PET scan is May 11th. These two visits will build the summer plan to continue the fight.